Gifted Issues Discussion homepage Forums Twice Exceptional Vindicated and not happy (vision issues)

Every time I saw threads here about vision therapy I thought, "That's not us. Yet." I was hoping "yet" wouldn't ever happen.

We were at a physical therapist for a completely different issue, and somehow the issue eye-hand-foot dominance came up, and the therapist said, "I don't think she's mixed dominance," and then she started testing her for convergence, and confirmed that DD can converge, but fatigues quickly on staying converged and tracking.

I've been saying for YEARS that DD7 has wacky visuo-spatial skills. She started reading short words at age 4, but is still not a fluent reader at age 7. She often starts out well with reading, but wears out really quickly. She is terrible at jigsaw puzzles. She is years behind on representational drawing, and much prefers abstract doodling. She doesn't appear to have any large-scale vision or spatial problems -- excels at gymnastics and archery and rock climbing.

I've always been a little worried that vision therapy was snake-oil, so I was a bit relieved when my search of the literature turned up much the same as what's been said here recently: there's a lot of nonsense in the field, but the stuff for convergence, accomodation, and related eye-muscle issues seems to be legit.

Anyway . . . big sigh. I've joined the ranks of people here whose kids need vision therapy. (The possible silver lining is that I would love it if her reading suddenly took off as a result.)

Um - welcome to the club?

It's a weird mixture of feelings, isn't it, when you pin down some issues? Frustration and oh god, really, do we have to make her do this too? All tossed together with relief and I knew there was something and now we can finally do something about it. Plus a nice unhealthy dose of guilt for not seeing it sooner when it seems so obvious in retrospect.

But maybe I'm projecting

We just finally started our VT this week. It ain't fun, but I am crossing fingers it helps. Something. Good luck, MegMeg

That sounds exactly like DS, with ages different. I'm going to have his ped make a referral for him. Good luck!

MegMeg could you post links to the stuff that convinced you it was legit? I am prepping for a meeting on Tuesday and could use some ammunition.

DD has been doing VT for 2 months and it hasn't been too bad at all. The drive to the vision gym has been very time consuming but she has been super cooperative with doing the excercises at home. She even did them while we were on vacation. She wants this fixed. (She has so many issues she want *something* to be fixed...) Some are difficult, or at least they were in the beginning. Now if she is assigned the same sort of thing it is much, much easier. I think this means it's improving. We go for a recheck in 2 weeks and will know more then.

In terms of reading improvement the first day with her reading glasses DD went from 59 wpm to 81 wpm. That told me the DO had accurately identified an issue or 2. The plan is to make the glasses unnecessary but we'll see what happens.

Aquinas I hope your pediatrician is cooperative. This is one of the first things I asked about when we started this journey 4 years ago and our pediatrician almost had a heart attack. Now that our insurance no longer needs a referral so I was able to do it. The only thing worse than the guilt of not seeing it sooner is having seen it and feeling like you failed to get your kid the help they needed when you DID see it and no one would believe you. Yeah that one's a whole lot of fun...

Aquinas - Let us know how it goes at the pediatrician. VT is not as well known in Canada I think as it is in the US. Our ped. discouraged us from pursuing it.

However, DS has DCD. The pediatrician told me this means he will need more practice to learn motor skills. To me, the eye control is a motor skill and the VT is his practice.

Unfortunately, there are not a lot of places where we are that do office-based VT. The place we are going - some of the stuff feels flakey, but I still think he benefits from most of the exercises. We've only done 6 sessions so far - we'll re-evaluate after 12.

Also - it's expensive and not covered by insurance. I'm not even sure I can use it as a deduction at tax time. :-(

Good luck Meg-meg! Your DD's reading issues sound very similar to my DS7. He _can_ read well but gives up quickly - especially with small, dense print.

He doesn't do well with puzzles and has a hard time picking out objects in a cluttered background (didn't find anything during my very easy Easter hunt this year).

We've only done 6 weeks so far of VT, so hard to say if it's helping. We're going to re-evaluate after around 12 weeks.

Pemberley, the main evidence all comes from one group, who have now done several trials of increasing size, all looking just at convergence insufficiency. Hardly overwhelming endorsement for the research junkies amongst us, but OK.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2821445/
http://www.ncbi.nlm.nih.gov/pubmed/18300086
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782898/

Here's a Cochrane Review:
http://www.ncbi.nlm.nih.gov/pubmed/21412896

Treatment recommendations are more based on expert consensus than solid research. All the major optometry associations, the NIH eye institute, etc, all recommend office-based VT as the first choice of treatment for convergence insufficiency.

Here's the American Optometric Association Clinical Practice Guidelines. Treatment options for vergence issues start on p. 36.
http://www.aoa.org/documents/optometrists/CPG-18.pdf

Just noticing this one on LD-related vision issues - looks interesting too:
http://www.aoa.org/documents/optometrists/CPG-20.pdf

Also:
http://www.aapos.org/terms/conditions/38

FYI, I get better info searching "convergence insufficiency" than "vision therapy" - but each time I do this, I still seem to find material I hadn't come across before, like those clinical practice guidelines I am now reading...

Thanks for the links Platypus - there are some there I hadn't seen yet.

Here's what I've found (I think one of these was linked in a different thread):

Shin et al., 2011

Lavrich, 2010

Barrett, 2008

Do you know which specific issues your dd is dealing with re vision? For our dd, VT was tremendously helpful. The one gotcha is that - in her case, the issue was muscle weakness, and muscles need to be exercised. She made tremendous progress with learning to read (and enjoying it) with her first round of VT, as well as in many other areas relating to vision. Two years after finishing up that first round, she needed a refresher round because her muscle strength had regressed. She went through round 2, did well for around two years, and is now again experiencing eye fatigue and occasional symptoms that her eyes aren't working together well. I don't think she needs another round of VT, but I do think that it's going to be important for her to keep up with a few of her key strengthening exercises throughout her life. DD is 13 now, and not overly thrilled about that idea! OTOH, she is very aware of what a difference it's made in her life

Best wishes,

polarbear

Do you know which specific issues your dd is dealing with re vision? For our dd, VT was tremendously helpful. The one gotcha is that - in her case, the issue was muscle weakness, and muscles need to be exercised. She made tremendous progress with learning to read (and enjoying it) with her first round of VT, as well as in many other areas relating to vision. Two years after finishing up that first round, she needed a refresher round because her muscle strength had regressed. She went through round 2, did well for around two years, and is now again experiencing eye fatigue and occasional symptoms that her eyes aren't working together well. I don't think she needs another round of VT, but I do think that it's going to be important for her to keep up with a few of her key strengthening exercises throughout her life. DD is 13 now, and not overly thrilled about that idea! OTOH, she is very aware of what a difference it's made in her life

Best wishes,

polarbear

Don't know, all we've got so far is the quick "follow my finger" test in the PT's office. So no way to know if it's muscular or something more central/neurological/complicated.

So you've only had a PT note the issue so far - are you planning to see a Developmental Optometrist for an eval?

polarbear

Yep, the PT suggested a particular Pediatric Ophthamologist, and my primary doc says that person is excellent and is putting in a referal for us.

Also, what is up with all the smart kids with vision issues around here? It this a Real Thing? Or just an illusory correlation?

So this is my guess - and that's all it is - a flat out guess lol! I think that first, you won't find parents posting or researching much online when all is well with their kids' world. Hence, chances are you'll find a higher-than-normal percentage of kids with any kind of challenge here.

Second part of my guess - high IQ kids are possibly more likely to have high IQ parents who are also perhaps more likely to dig dig dig until they have the answer for everything

polarbear

ps - that's great you have a reference to a good Ped Ophthalmologist!

FYI We were sent to a "good" ped opthomologist 4 years ago who said DD "had the best set of eyes he'd seen all year." No problems, no need to return for 5 years.

Fast forward - Developmental opto earlier this year said DD has double vision she can force together but it doesn't come naturally, has no near vision, each eye sees a different image so her brain alternates turning off one or the other, one eye is 20/32 the other 20/40, has outstanding distance and peripheral vision which further distracts her brain trying to sort out the images, etc.

Keep in mind that DD has migraines and 40+ points difference between her verbal comprehension and visual perception scores so there were obvious concerns. YMMV but I would be sure to check the ped opthomologist's position on the validity of VT before putting full faith in him/her.

Polarbear -- very likely! But I also wonder if there's one of those random genetic linkages, like left-handers being more likely to be good at math.

Pemberley -- sorry to hear about your bad experience! Since the PT recommended this person, hopefully they are on board with treating convergence problems.

My DS9 has had vision issues from the beginning, and we started taking him to a ped ophthalmologist before a year old. I will second that they tend to believe surgery and lenses fix vision issues and aren't necessarily VT supporters (and in fact, may be strongly opposed to it as quackery). That said, I still am on the fence myself, and curious. DS's alignment issues returned a year ago as blurred vision that was resolved by adding a bifocal to his strong farsighted Rx (his current physician is an specialized optometrist).

However, we just recently, separately, got a diagnosis of DCD (so now I'm revisiting posts on this forum!), and I'm so wishing there were a point person who could just manage his whole being, the gifted, the vision, the anxiety, the motor issues. Guess that will have to be me!

On a related note, I myself had alignment issues from birth (no distance issues, though), and only focus with one eye (I can switch it myself, on demand), but my left eye focuses, while the other is purely peripheral. Brains are amazing at compensating and finding a solution. Too late for me on VT, though.

We just came from DD's recheck with the developmental opto and all I can say is O.M.G.!

3 months ago left eye was 20/40 and right eye was 20/32 - now both are 20/20. She rattled off a number of areas that are now measuring age appropriate, another bunch that were significantly improved but we still need to keep working to improve. Not making any changes to reading glass prescription or 2x week office visits but will be tweaking home assignments to focus on the more limited areas that need work.

For me the most important thing she said is that the 46 point difference between Verbal Comprehension and Visual Perception on the WISC-5 in January was not a valid measurement. "She couldn't see the page. There was nothing to measure." And "If you put DD with her abilities inside the body of a kid who was actually able to see the page you would have gotten a competely different result." Finally a reasonable answer to the evaluator saying that the difference in DD's scores exists in 0.0% of the population! DO is going to do her own Visual Perception test later this month. ("We didn't do it when she first came is because everything was so crazy - she couldn't see anything on the page - it wouldn't have told us anything...")

So for what it's worth VT seems to be working here. I wish we didn't have to travel so far but it has been SO worth it!

Holy cow, Pemb, that is great news. Kudos to you for keeping on it.

Wow!

Yay Pemberley - that's great news!! I would say I'm surprised... but I'm not. We saw equally dramatic changes the first three months of VT (in our case our dd went from a struggling reader to a kid who loved reading so much she never comes up for air - and it all happened truly that quickly). The tough part was the next stage - where progress isn't as obvious or as quick, and as the lessons start becoming more of a routine than something new and exciting to look forward to (ok, I suppose my dd never thought of them as exciting lol). Not everything "stuck" for our dd either - but it was so totally life-changing for her.

I'm glad your dd's had great results - just so wish someone had noticed her vision challenges earlier in her life!

Best wishes,

polarbear

Here's what I don't get -- why aren't the relevant weaknesses strengthened just by reading practice?

Hi Meg,

I can't give you the specifics for Pemberley's dd, but I can explain why the relevant weaknesses that my dd experienced couldn't be resolved just by practicing reading.

First, the issue isn't that the child doesn't understand how to read. The issue is (in my dd's case) weakness in the muscles that support the eyes. The weakness (for my dd) resulted in difficulty focusing the eyes together, severe double vision, the vision in one eye often being turned off when the inability to focus overtaxed her brain, severe lack of peripheral vision, and difficulty tracking (eyes don't follow the same direction at the same time). All of those symptoms, occurring in a child who is in early elementary school, meant that learning to read was difficult for my dd, as well as the act of reading. Using her eyes to read for any period of time resulted in extreme fatigue. She often skipped lines when reading, as well as wasn't able to make out simple sight words that she knew simply because her eyes didn't focus well enough to recognize letters. Practicing reading couldn't solve the issue of weak muscles, and it also wasn't helping much in terms of improving reading ability because of the inability to see and focus well.

Vision therapy is made up of exercises that exercise the eye muscles, much the same as riding a bicycle exercises certain leg muscles, or swimming exercises specific arm and leg muscles etc. With exercise, muscles get stronger and develop the ability to work together. I don't have time to list out how specific exercises worked, but there were many exercises that really don't look much like reading at all.

I hope that helps some with explaining the difference!

Good question

polarbear

Ok all you VT alums I need some help.

Last month I posted an amazing success story about how much my DD10 has improved since starting VT in May. I got the results of the visual perception eval the other day. All in all not nearly as strong as DO had led me to believe. Still some areas measuring below the 1st percentile and in single digits, a few areas around 25th percentile and one, Spatial Organization, measuring 84th percentile (2 years above age level).

On Tuesday DD texted me from the school bus saying she was feeling nauseous. She has been saying this off and on recently and complaining of stomach aches. She made it to school without getting sick, barely, and I immediately picked her up. I had a phone conference scheduled with the VT that morning so I told her about this. She said that she believed it was related to the VT, that her brain was reacting to suddenly getting visual input from both eyes. "That all over body feeling is common at this point." She said we should expect it to last a couple of weeks. We discussed that the OT in school is going to incorporate some of the VT excercises and that we might drop to once per week in office so DD doesn't get overwhelmed. A couple of weeks ago we reached the point where DD was beginning to get less cooperative. One particular exercise seemed to precipitate this nausea so its been harder to get her to do the excercises daily.

Later that day we went to her appointment and the front desk person told me I had an outstanding balance for a "no show" appointment. I made it absolutely clear I had cancelled the appointment in question - pointing to the exact time and day that I had called. She made clear there was "no way to write off a missed appointment." Eventually they relented but I made clear we would not be back if this was not resolved. I left with a bad feeling...

Today, 10 minutes before her appointment as DH was driving her there, I got a phone call saying they had left me a voicemail "a few days ago". (No such message on home or cell phone.) Supposedly they had discussed with us that the visual perception eval was not likely to be covered by insurance. (Umm... No they didn't. In fact they assured me it would be, collected my copay and sent me both hard copy and digital versions of the report.) 10 minutes before the appointment they tell me it was declined and I have to pay $500 for it before DD can be seen today. First I've heard of any of this while DD is in the car 10 minutes before her appointment. And don't forget the no show policy meant I would have gotten charged for the cancelled appointment...

Obviously no chance to discuss with insurance. For speech eval this summer I got all the evaluation codes and confirmed coverage before eval because I was told it might be an issue. So far insurance has covered everything except materials fee and fee for written report, neither of which I was told about in advance. I had NO reason to believe this would be an issue. And it is compounded by their less than truthful actions earlier this week over the appointment I cancelled and their claims that they left a voicemail about this. I am infuriated over their business practices and am beginning to see why VT may have such a poor reputation.

So... DH cancelled all future appointments. We have done 18 weeks of 2x a week therapy. We can do the exercises at home and school OT will be working with her. Had we been given any indication this might not be covered we would have a) worked through our insurance in advance and b) requested a visual perception IEE which I am pretty confident district would have done. This sort of business practice makes me question if I've been sold a bill of goods or if the results the DO reported were real.

So... Oh wise members of the forum... am I right to feel concerned enough about their business practices and lack of forthright communication to pull her out? Has she made enough progress that I can justify ending the long drive for services and continuing at home and with school OT? Am I just being rash and making a poor decision to pull DD put of a service that seems to be helping?

When we started the DO said she expected DD to need 6-8 months if we came to the clinic 2x per week, a year if we went once per week. They have also said she has made *amazing* progress - apparently well ahead of what they expected. I know some people here don't get any insurance coverage for this at all and/ or have limited the VT commitment to 12 weeks or so.

Input please?

Please share the name of this putrid doctor to ensure that no others are ripped off like this again.

This is wonderful news!

for my ds15, I would say he just tended towards books with lots of white space, and pictures so he could keep his place better without it being a conscious decision, necessarily (captain underpants, and then later diary of a wimpy kid, for example). there were a few exceptions, but mostly anything with just massive text would really slow him down once he reached regular novel size and type a couple years back.
He would also take a LOT of breaks, probably because of fatigue, but because he was older, the only thing I saw was that it was taking him longer and longer to finish a book, and he was really picky about what he would read - so I think these are reasons just reading doesn't fix the issue - the child is pushed away from the areas that are harder and they don't practice on those areas.

Thanks Portia. It's just so frustrating to have something that appears to be working go off the tracks because of bad behavior from the business side of the practice. I would think that with all the quackery and skepticism about VT someone who is "doing it right" would want to assure that their business practices are beyond reproach so as to not get lumped in with all the folks who give them a bad name.

To be clear insurance has covered everything so far - all evals and therapy appointments covered in full. All co-pays paid at the time of service. 30+ appointments with never a no-show or unpaid balance. Absolutely no reason to treat us this way. I would think if someone doesn't show for a regularly scheduled appointment you would call them - to make sure they are ok if nothing else - not ambush them weeks later and demand payment. If you are the one that handles insurance claims for a specific service and have reason to believe you may have difficulty getting coverage I would think you would share that in advance so your patient/client can work out insurance coverage or a payment plan *before* you provide the service, especially when you have a few weeks lead time to make the arrangements. If there is a problem with insurance you ask the insured to check with their provider. You work together to get it resolved, or better yet to avoid the problem before it happens. You don't demand an immediate $500 payment with no prior discussion. And you certainly don't fabricate stories about conversations or voicemails that never happened.

And yes, DO has a large staff who all seem quite young and inexperienced. The therapists and "coaches" are good with the kids it's just the business office staff that make me uneasy. I have not seen that mature, experienced office manager/ problem solver you tend to encounter in most well run medical offices. There is instead a sort of cavalier arrogance that I assume feeds on desperate parents clutching at anything that they think will "save" their child. I thinks that's probably where my unease comes from. It makes me wonder if I have just been gullible. I believe VT has been very helpful but this approach makes me second guess my experience.

Yuck...

My earlier post was made in haste, I should have said putrid doctor's practice.

Please do share this because the front office staff make or break a practice. Doctor's that choose to hire the dumb/the arrogant/the lazy/the forgetful (or all of the above) are doing so for one reason - keeping costs down, i.e. maximizing profits at the expense of customer service. This isn't a five and dime, it's a medical practice and the service when delivered properly can be life changing.

Whenever I see a practice with (and I'll call it what it is) crap front office staff - warning bells go off in my head. I suspect that the office staff failed to get clearance in time so we're trying to cover up their mistake in your case. Who knows which samples are being mislabeled, reports misfiled in such a place.

I really think that you should try to speak with the doctor him/herself about this and if you do not get a degree of satisfaction then you really do have a moral obligation to prevent them from damaging other families like this by shaming them publicly.

Sorry for the rant (mods feel free to delete) but medicine for profit (to the detriment of patient care) really just gets my goat and this is an especially egregious example of it.

This was my thought, too. It seems suspicious and like the front office is playing CYA to avoid trouble with the DO.

I wouldn't be too quick to throw the baby out with the bathwater, if you believe the therapy has benefited your DD. I agree with the advice to speak directly with the DO. They have an ethical duty to your DD and if the office staff has made mistakes that compromise her treatment--a good practitioner will want to make that right.

I have a private practice myself and when I've made mistakes (failed to get prior authorization on time), my services aren't charged to the client. Health care providers *eat* charges all the time. I'd talk to the doc about the ethics of this situation.

Update: DH spoke to our insurance company and was told there should be no problem getting the eval covered. Looks like it wasn't submitted properly so he filed an appeal and we assume it will all be a non-issue. So yes apparently a CYA scenario that created unnecessary aggravation. That takes care of the money part but doesn't make me any more comfortable with the cavalier attitude...

VT seems to be helping so I do want DD to continue if we can. I think I will try to work out bringing her once every few weeks so the VT can monitor her progress, update excercises and continue to coordinate with school OT. If I'm lucky DH will agree to bring her so I won't have to deal with them and my now developed knee-jerk reaction looking for problems.

DO is about to go on maternity leave so is crazy busy as everyone tries to get needed appointments with her before she takes a month off. I don't think any conversation with her would be productive right now but will talk to her after she returns. Well assuming we are still with the practice at that point.

The really good news is DD hasn't complained of the nausea for a few days and is back to doing the VT exercises without too much grumbling. Crossing my fingers that she continues to improve and we can make this new plan work.

Thanks all!

Just as an FYI, in case you aren't aware: when an insurance claim is denied, there is an explanatory code referenced on the denial. The biller should have been able to see where they'd made an error (left off a critical piece, used the wrong dx code, etc.) That was just crummy treatment on behalf of the front office, but I wouldn't be at all surprised if the DO has no earthly idea how the insurance side works. It seems to be an art form in and of itself.

Glad your DD is doing well and hope your DH can take her! It's hard not to have these reactions, isn't it? I think it must be part of the PTSD thing that goes along with having a 2E child. It's hard to assume/trust that the world is a safe place when your experience points in the other direction.

Sending support.

I empathize with your frustration. I also have made myself known at the VT office for disliking such incompetence. The doctor had said directly during our evaluation that she wanted to have a checkup at a certain number of weeks for the children. Of course it was summer when the time came, and the front desk staff couldn't find a time slot for a month beyond the target date. She said that she checked the other office's calendar too, and that we should just keep coming every week until the eval appt. I have two children doing this simultaneously and our insurance does not cover a penny. So you can imagine that I did not take lightly the assumption that we would automatically pay for four extra weeks without the doctor confirming it to be necessary. Two days later, I called the other office, and sure enough, they had plenty of slots in the time window needed. When we did have the evaluation, I relayed the situation to the doctor, and she was glad to hear about it. They have had other issues with customer services, and she said the more specific info they had, the better for getting it resolved. It's a pain, but when the doctor is back from her maternity leave, I'd recommend letting her know about the issue. It may help prevent it from happening again to you or others.

Update part 2: just got a call from the vision therapy clinic. NOT from the vision therapist who was supposed to have called last Friday but from her assistant. I spelled out everything just as I did here. In the strongest possible terms. (I'm no shrinking violet in case you haven't noticed...) She went from snarky to professional to a bit scared to apologetic and trying to figure out "is there a way to make this right?" Billing person called DH a few minutes later and he explained that they had used the wrong code and what needed to be done to resubmit the claim. His call ended with "Dr. _____ is not in the office today" so we assume she will be informed of the problem tomorrow. I expect her to call, DH does not.

So onward. I am quite certain that I made my point. What I am not sure of is their willingness to alter their practice. I guess we will see what happens...

If the practice is still remiss after you talk with the DO, or if you get a sense that the behaviors come from tone at the top, I would file a notice to your insurance company of the clinic's unethical practice to remove the clinic entirely from the insurer's approved providers. I might also contact a few of the other major insurance providers with copies of my records and correspondence with my insurance company. Insurers want to minimize coverage of services by disreputable service providers. Speaking as someone with experience in healthcare, insurers take this very seriously. You'd potentially be doing many families a favour, as I'm sure the share of insured clients out of all clients is high.

This is very interesting becasue DD was going to a private psychiatric practice for therapy and lets just say there were some billing irregularities and it appeared they were grossly over-billing insurance for services. Insurance covered everything but Dh complained. It seemed like insurance blew him off, but a few months later we got a letter in the mail from insurance stating insurance was no longer considering that practice an in-network provider. I assume other people were reporting things as well, or they took a very close look at the billing and rates and saw how absurd it was. The practice was very unethical in how they treated us overall. In retrospect, everything was about business/money for them, although at the time I wanted to believe they were helping.